I'm 22 yrs into my rare disease journey and still have no clue most days 😭

This is both reassuring and terrifying LOL to both of you❤️ I feel less alone hearing this but I feel a little hopeless hearing this as well. I was hoping people who had this awhile and been around the block with the doctors who are dismissing a while tried to manage it at home all their different diagnosis would have some sort of mastery you find that you guys are just as clueless and bumpy all the way along makes me feel less Clueless and incapable of managing myself and yet a little sad for my future😥🙏👍 wish the best for both of you. I do my best to take the best care of myself possible. Do as much research as possible. And try to take care of it on my own. As far as I can tell right now I'm not doing a very good job at it

I've had multiple issues with my health for over 35 years. The best advice I have is to take it 1 day at a time. It is overwhelming, and frustrating at times. Do the best you can. Choose friends who understand when you need to cancel plans, etc... 😥💕

Thanks. It sounds like I am not alone

Helpful suggestions. I feel like I have to start over. New friends, new schedule, new outlook, new way of eating etc. That's a lot

It is a lot, Overcomer, so don’t do it all at once. I noticed with my friends, it quickly became apart who was understanding and who wasn’t supportive. The friend groups shifted naturally because of this. And I found that it was always a nice surprise when friends were supportive about it. If it’s celiac disease feel free to DM me. I’m still fairly new to the game, but I’m learning!

Thanks. It is a learning process

Agrees Corglo. I am learning when I am having low days that turn into weeks to do self care and ask for help. I am learning to go through it and not fight it in order to push forward. It is helpful to hear how others pushing forward too

👍

😥